Erin P. (erinstotle) wrote in ed_ucate,
Erin P.

Catering to disorders (on Prader Willi syndrome) - Toronto Star

Catering to disorders

Disease makes 26-year-old hungry all the time

Shadow Lake handles special needs with care

Jun. 15, 2006. 01:00 AM

Hunger makes everyone a little more resourceful. Especially when you're hungry all the time.

So the Beddoe family takes extra measures when it comes to keeping their son out of the cupboard. All the food — from pantry to refrigerator — is locked up tight. And the hiding place for the key is changed often.

Such precautions for a son who visits only on weekends may seem a little extreme. But Christopher, who will turn 27 soon, was born with an appetite for destruction.

Diagnosed with Prader-Willi syndrome, a genetic disorder affecting one in 12,000 Canadians, Christopher never knows when he's full. He lives, instead, with a constant gnawing hunger — a drive to eat at any cost.

"It's a hideous disease," says his mother, Jan Beddoe. But she adds, "As long as Christopher doesn't have any hope of getting food, and as long as he doesn't have any worries that he might get it ... it's pretty manageable."

The condition is also characterized by certain facial markers, delayed development, some intellectual impairment, short stature, behavioural problems and, predictably, weight gain.

"The biggest problem is finding appropriate support services, and there are different needs at every age level," says Dianne Rogers, president of the Canadian Prader-Willi Organization, based in Prince Edward Island. "And services provided either in schools or residential care or respite are often not appropriate for our children — or there's not enough to give families the support that they need."

With a 7-year-old daughter who has it, Rogers knows all too well how parents struggle to cope with the effects of this little-known disorder. "They often feel isolated and that they don't have enough support, because it is difficult to understand exactly what Prader-Willi syndrome is all about."

To control his weight, Christopher follows a special diet called "Red, Yellow, Green," which labels foods according to their calorie count.

"If it's properly in place, and followed with zero deviation, including things like Christmas Day and birthdays ... behaviour is improved enormously and weight loss occurs," his mother says.

"We're in that really happy situation right now where Chris is losing weight. He's actually lost 40 pounds since Christmas."

Christopher no longer lives at home, spending his days instead at Oaklands Regional Centre, a residence for people with developmental difficulties — where the diet is strictly followed.

Fortunately, it's also followed at one of Christopher's favourite places on Earth: Shadow Lake. Since he was 18, Christopher has been heading each summer to Shadow Lake Centre, a 120-hectare campsite on the Oak Ridges Moraine, about 45 kilometres north of Toronto. Run by Community Living Toronto, Shadow Lake offers a special camp for people of all ages with intellectual disabilities.

Only a small number have Prader-Willi syndrome, but even so, director Gary Ouellette and his staff make enormous efforts to accommodate them.

"I love Shadow Lake," says Christopher, mentioning dancing, swimming and "walking in the beautiful outback."

Swimming merits special attention. "He has somebody who swims over and back with him every single day across the lake," says his mother.

"I love the fact that Gary takes me on bike rides," Christopher adds.

Shadow Lake's program is one of 98 funded by The Toronto Star Fresh Air Fund. In its 106th year, the charity aims to raise $575,000 to send 25,000 underprivileged children to camps throughout the province this summer.

Christopher is no longer a child, but camp remains a summer staple.

When Ouellette learned that Christopher was having major surgery this summer, and that recovery time would keep him from overnighting at Shadow Lake, he didn't hesitate.

"Bring him any day for a day trip," he told Jan. "Just come on up and spend a day at the camp."

So they will. A few trips, even.

"Christopher now is perfectly happy, because he gets to go to camp, he gets to see Gary — which is all they all want to do, is see Gary," says Jan. "He knows them all so well."

Christopher Beddoe follows a strict diet as his genetic disorder leaves him with a constant gnawing hunger.


Note: I didn't realize how intense Prader Willi syndrome was until I read this. Here is a general description of it under the ed_ucate diagnostic criteria.

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